Assessing Patient Centered Urological Care for Spina Bifida: A Collaboration Between the European Association of Urology–European Society for Pediatric Urology (EAU−ESPU) Pediatric Urology Guidelines Panel and the International Federation for Spina Bifida and Hydrocephalus (IFSBH)
Rattachement africain : nl, at, it, tr, dk, es, be, se, fi, ch. Niveau de preuve : code pays fourni par la source.
Le résumé fourni par la source
INTRODUCTION & OBJECTIVES: People with spina bifida (SB) require lifelong care from various specialists, with the organization and availability of care differing across Europe. This variation likely impacts care outcomes from a patient perspective. Children with SB have emphasized the importance of researching quality of life (QoL) and sexuality. The European Association of Urology-European Society of Pediatric Urology (EAU-ESPU) guidelines panel aims to ensure optimal care for these children by incorporating patient perspectives into clinical guidelines. The International Federation for Spina Bifida and Hydrocephalus (IFSBH) promotes the rights of children with SB to improve their QoL. In collaboration with the IFSBH, the EAU-ESPU guidelines panel has developed a survey to evaluate the current organization of care, demographic features, and received treatment. MATERIALS & METHODS: The digital survey was created on Surveymonkey® and included a primary survey on demographic features, medical treatment history, and organization of care. The second part included the QUAlity of Life Assessment in Spina Bifida (QUALAS) questionnaire and the International Index for Erectile Function (IIEF-5) for boys and Female Sexual Function Index (FSFI-6) for girls, both for ages 13 and older. The survey was available in 11 languages. RESULTS: A total of 281 respondents completed the survey. QUALAS scores reported were all lower compared to standard values. QUALAS-C (Esteem and Independence): mean score 56.0 ± 19.9, (Bladder and Bowel): mean score 56.0 ± 27.7, QUALAS-T (Family and Independence): mean score 60.1 ± 20.3, (Bladder and Bowel): mean score 53.7 ± 25.3. The QoL was assessed across eight domains, all scored below 6 on a 0-10 scale, with the lowest scores for sexuality. Sexuality was assessed with validated questionnaires for 46 respondents. FSFI-6 (Females): Mean score 14.45 ± 8.28, indicating female sexual dysfunction. IIEF-5 (Males): Mean score 17.00 ± 6.03, indicating mild-moderate erectile dysfunction. The assessment of organization of care included catheter and medication use, with notable differences in payment methods among countries. Healthcare provider contact revealed difficulties with varied first points of contact. CONCLUSION: The results of the survey demonstrated that respondents with SB experience worse QoL compared to historical cohorts. Decreased sexual function was observed in females with SB, while males exhibited mild erectile dysfunction. This underscores the importance of addressing these topics in both clinical care and research. Variations in care organization were identified which can be used to improve healthcare for people with SB. TRIAL REGISTRATION: NCT06725745.
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Le contrôle bibliographique ouvert
DOI retrouvé dans Crossref DOI retrouvé ; titre concordant.
- Titre Crossref
- Assessing Patient Centered Urological Care for Spina Bifida: A Collaboration Between the European Association of Urology–European Society for Pediatric Urology (EAU−ESPU) Pediatric Urology Guidelines Panel and the International Federation for Spina Bifida and Hydrocephalus (IFSBH)
- Date Crossref
- 27/07/2026
- Éditeur
- Wiley
- Type
- journal-article
Ce recoupement confirme des métadonnées liées au DOI. Il ne confirme ni la méthode ni les conclusions de l’étude, et il ne compte pas comme une seconde source scientifique indépendante.
Où se fait cette recherche
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Erasmus MC pays non établi dans la noticeÉtablissement de santé
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Innsbruck Medical University pays non établi dans la noticeUniversité ou école supérieure
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Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico Department of Paediatric Urology pays non établi dans la noticeÉtablissement de santé
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European Association of Urology pays non établi dans la noticeOrganisation à but non lucratif
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Radboud University Nijmegen pays non établi dans la noticeUniversité ou école supérieure
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Radboud University Medical Center pays non établi dans la noticeOrganisme public
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University of Padua pays non établi dans la noticeUniversité ou école supérieure
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Bambino Gesù Children's Hospital pays non établi dans la noticeÉtablissement de santé
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Ankara University pays non établi dans la noticeUniversité ou école supérieure
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University Medical Center Groningen pays non établi dans la noticeÉtablissement de santé
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Aarhus University Hospital pays non établi dans la noticeÉtablissement de santé
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Central Denmark Region pays non établi dans la noticeOrganisme public
Erasmus MC, Innsbruck Medical University et Department of Paediatric Urology — Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, avec 9 autres affiliations.
Une affiliation ne permet pas de déduire la nationalité d’un auteur.